Health care initiative helps patients with chronic diseases articulate to providers what matters most in their dying days

Recent studies have collectively led to a renewed focus on end-of-life preferences, and this discussion is proving increasingly relevant to providers in the emergency department. A study from the University of California San Francisco, published in Health Affairs, demonstrates that half of older Americans are seen in the emergency department in the last month of life.¹ Most are admitted to the hospital, and many die there despite what we know about the wishes of older patients with chronic disease.

The Conversation Project in conjunction with The Institute for Healthcare Improvement just launched an initiative to help patients begin this conversation with their health-care providers.

It asks patients to articulate what matters most to them at the end of life. It also asks patients to articulate their wishes through “Where I Stand” scales. These scales acknowledge individual differences in what patients want and expect at the end of life. Using a five-point Likert scale, the material provided in The Conversation Project packet asks patients to express both how much information they would like to receive and how much care they would want at the end stages of life. Patients can choose “I want to live as long as possible no matter what” or “Quality of life is more important to me than quantity” as the extreme choices along the scale. They can choose “I wouldn’t mind being cared for in a nursing facility” versus “Living independently is a huge priority for me.”

Why should EPs take up the end-of-life banner? Ninety-six percent of decedents were admitted through the ED in their final 108 days.

The material also allows patients to choose how involved they want family members to be and who those involved persons should be. Patients are even encouraged to select a time for the end-of-life discussions and the setting where they would be most comfortable having them (ie, “At the kitchen table,” “On a long drive,” or “At my place of worship”).

It even offers suggestions for scripting that would introduce the subject to family members and talking points for providers.

The entire packet is written in lay terms and does not require a high level of medical literacy. Finally, the packet helps patients to record these wishes in the documents that are commonly used: the advanced directive, the health-care proxy, and the living will. The Conversation Project packet even clarifies those entities, which often confuse patients and families.